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TKR Red dots...Do I have an allergy to my TKR??

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SLEEP at last! :happydance: After 4 nights of no sleep, I got 2 wonderful nights of good sleep! Thanks pdx for the tip on water. The sleep came after drowning in water the last 2 days! Anything that works!:yahoo:Tomorrow I will get the results of DNA and other blood tests when I see the Dr.
 
I haven't posted in awhile. My DNA tests were all negative, so I don't have that part of the Lupus. But it is definitely Vasculitis caused by Lupus. I am now on a lower dose of prednisome, an imunosupressant, Imuran and the anti malaria drug, Plaquenil and hydroxyzine HCL for hives. Before last month I took one high blood pressure pill and that was it! These meds make me very tired and dizzy. I nap every day whether I want to or not. I am sleeping now thanks to the hives pill that I take at night. I have to watch the sun and right now that is fine. But I live at the beach, literally, and the warmer weather will be a challenge.

I am very happy with my Dr. He sees me every week and now every other week. He wants me to send pictures from my phone of any changes in the vasculitis. The lower prednisome brought it back in my legs. He really wants me off the prednisome, but it will take time. The other drugs take 6-8 months to "kick in". So it will be a year before anything really works.

I was in PT to gain back some ROM in my knee after 2 1/2 years. Well don't let anyone tell you that it is not possible.....because ROM is POSSIBLE ! I gained 13 degrees of new ROM flexion with a month of PT. I really worked on the stretches. My knee feels great! :happydance:
 
You go girl!
 
Great to hear from you Mimi, I was wondering how you were doing. Congrats on the rom gains! I do hope you can get the rest of the issues under control. You are a strong woman, stay patient and keep fighting! Your cyber support system is always here!

Be well,

Dawn
 
Sounds like your doc is keeping on top of this. Congrats on the ROM!:cheers:
 
Mimi, you have been through the ringer. I have sjogren's syndrome---we never know when these auto-immune disease will begin to be active.
 
Kneeper, my Dr. has been the best part of this crazy journey into this auto immune abyss. I have a very long way to go before I see results. My Dr. always ends my visit with, "Please feel free to call with anything that you need." That is something that I have not heard from any Dr. in a very long time. When he saw me for the first time, I was the last patient of the day. He kept his full staff there to assist in my diagnosis, draw blood, meet the PA. And I had a diagnosis that day with my blood tests I faxed him and the exam and the physical presentation of my vasculitis that day. He said he had never seen such a "perfect specimen" as my ankles that day!:yikes: He also said that after getting my emailed pictures that he had to see me immediately. His office calls me at least once a week and are so available. I am grateful to have such a thorough and caring Dr.
 
skigirl, tell me more about your sjogren's syndrome. When and how did it start? What is your treatment? How long have you had it?
 
there is no treatment for Sjorgren's. I go to the rhumatologist twice a year and she tells me there is no treatment.

I have had it for 10 years. Mostly, have dry eyes and mouth---I have so much dental work you would not believe it.
 
I am so sorry to hear this. I asked because I have a neighbor who is going through this and she is in the middle of having teeth pulled and replaced. It is so difficult to deal with this kind of a problem. My neighbor was a very up and outgoing person and now she keeps to herself, heartbreaking.

Auto immune diseases are very unkind to their victims. Today my Dr. lowered my predisome and Imuran (immune suppressant). I haven't felt like myself since this all began months ago. At least I have a diagnosis and there is a treatment. However, this treatment is not without plenty of risks and problems. I finally go twice a month for blood tests and that is a relief as my veins have left town! :groan:
 
Hang in there Mimi. It is good to at least know what you're dealing with and to have a doc who is in the fight with you. These issues are so challenging for sure. I feel for you.

Do keep us posted and congrats on at least seeing progress with the knee!

Happy Thanksgiving my friend!

Dawn
 
I agree that autoimmune does get you down---fatigue is a constant with all auto immunes. However, I still see folks and still do lots of playing too. I ski every day in the winter and the other seasons I go to a local gym.

One thing for me is that I have left cities behind forever--too tiring---the noise, the hoopla. I live in a little town (5000) people in Montana. It is beautiful here and much slower paced. I live my life outdoors and don't worry about clothing or brands. I recently sat next to a woman with a Versace purse--a real one. I told her I had never seen one except on Sex in the City. I told her that every purse that I like is over $100 and so, I use a messanger bag that I got at Salvation Army for $3.

She told me then that her purse cost $2000!!!! I could not believe it!!! Here in Montana there are lots of kids who do not get enough to eat---I could not carry a bag like that and live with myself. I volunteer a lot---I teach lots of folks to ski for free---I look at my face in the mirror and I am happy with myself. In the city it seems more important to find a way to impress people. In a small town, it is not worth the effort since we all pretty much know one another!!

My local gym costs $30 a month has a warm pool and a regular pool. When I go to water aerobics, I know most of the people there. This is the life for me---easy and slow paced.
 
I totally agree with you Skigirl. I lived near a metropolitan area all my life. We retired to a tiny town near the ocean.
I soon found that, as you said, life was at a much slower pace here and people were more friendly and "real". No "label style" here. I too would never spend that kind of money on a purse. Just do not have a value for that type of consumption. As I used to tell my kids, if you put out thousands, you better drive it or live in it!!!
 
Warfarin and Tamasol cause skin reactions. What is a mystery is why after discontinuing the drugs which caused severe rash, macules or red dots and severe itchiness the itchiness remains
 
Orthodouleur....welcome to the forum. Since you are new to BoneSmart, how about starting a thread of your own to tell us a little about yourself and your situation. We like to get to know our members! And that way any comments folks might like to make on your post(s) won't derail this thread. If you need assistance on starting a thread, let us know. There are instructions for using the forum under the HELP & INFO tab at the top of the page.
 
I have a small update. When I saw the Dr. 2 weeks ago he reduced my meds!:yay: I have come down from 40 mg. of prednisome to 15 and he reduced my azathioprine (Imuran) from 100mg to 75. I still am having vasculitis on my legs, but not as severe as it was. I know this is going to take time and patience. I get dizzy and very tired from the meds. And the prednisome has given me a lovely "moon face". I am not happy about this fact, but it is all part of the treatment of Lupus, a cruel and mysterious disease! :gaah:
 
Hang in there Mimi, it sounds like a trial and error thing. I do hope you are able to gain your energy back, you've been doing so well until this. Do take care and keep us posted!

Be well,

Dawn
 
@Mimi Oh my goodness Mimi, you have been going through hell! Thank you for giving me this link to your thread. I just read this thread from beginning to end, and I can't believe what you've been through. When I first diagnose with RA at 50 years old, my rheumatologist told me that it's very hard to diagnose RA, Lupus and MS because they all resemble each other so much. I'm glad you were able to find such a good doctor who was able to help you, because I know how scared you must have been. That rash would have scared the day lights out of me that's for sure! Has the rash subsided now? When I was put on prednisone at 50, I found myself with tons of energy, because the RA pain was gone, but I also developed a very mean streak, which I was not happy with at all. Only after the outburst would I realize what I had done, like I was outside of myself! Not nice! I also developed the dreaded "moon face" again, not nice! I so feel for you my friend, and I pray that when this clears up it never appears again. (((HUGS)))
 
Mimi, I'd lost track of your thread. So so happy you're doing better and that you're able to take less prednisone & Imuran. My sister's been on the former forever, so I know what you mean about the moon face. On the other hand, it seems to give her amazing energy; go figure.
I just had Knee 2 done. So far, so good.
Enjoy your holidays!
 
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